Reasons for CDC deplorable conduct

I really am curious about this: I'm fairly certain some researchers said they believe, based on the structure of XMRV, that it's been in humans at some level, for hundreds, if not thousands of years.

From what I've understood XMRV comes from mice and somehow jumped into people recently. At least according to what John Coffin has said.

If this was common knowledge why is it just now coming up?

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Vince Rancenello said the hundreds to thousands of years. Coffin has been working with cultures contaminated with XMRV since the 1970's. They thought it was a mouse remnate from working with human tissue samples in mouse cultures back then. They had no ideal they were working (most likely) with a human retrovirus.

What about the deliberate misappropriation of funds that were meant for CFS research as a reason? Didn't someone at the CDC (no names mentioned) use the whistleblower law to turn in another department for taking money allocated for CFS research and buying equipment meant for another department? What if this person knew that CFS money was being taken all along and was o.k. with it (as in "I'll scratch your back and you scratch mine"). I think in the beginning they were so sure that this disease was "hysterics" because of their large egos, that they felt they had no need to take it seriously. What if they gave away CFS research money to other reasearchers who were reasearching diseases that were more important in their mind? Thus, they are determined to justify their actions to themselves by not taking any real steps to find out if CFS is really caused by XMRV. When you watch a story on the news about someone covering something up, isn't the motivation 99% of the time money? Perhaps they are running on fear that the more publicity that happens surrounding the XMRV connection, the more likely they are to get caught.

Read Hilary Johnson's blog for a description of the people involved, Strauss, Reeves etc. Second rate minds with giant egos, who have built an empire in a small, ignored part of medicine. They were never going to admit they were wrong and they hate patients for disagreeing with them.

The task ahead for the CDC is to ensure that funding for CFS continues. No government department likes to lose a chunk of its funding. Since studies are showing XMRV pervasively through the ME/CFS community, they are desperately trying to create a new disease that will ensure their funding. I don't even think it is about covering their backsides. A very large chunk of their original target market may very well qualify as having XAND (70% and higher) and they need to quickly show that there are still many people out there with fatigue that need their help.

I might add that the CAA is facing a similar dilemma if XMRV bears out. Perhaps the CAA realised this a long time ago and tried to hedge their bets - at times they have been slow to get behind the XMRV train. A large chunk of their funding is most likely contingent on the continuing search for a cause. Once that cause is gone, bye bye CAA. Their membership will collapse, their funding will collapse. It certainly is in the CAA's interest for the search for the cause of ME/CFS to continue. They are caught in a bit of a bind. The careers of many people are dependent on ME/CFS remaining a mystery. On one hand they must be seen to be proactively participating in the search, on the other hand...

We have to add in Western societies' gullibility for psycho-babble. That is another long story with a massive historical contextualisation. The notions of 'hysteria' and 'neurasthenia' as psychogenic synonyms waxed and waned but never actually went away, even when advances in medical knowledge showed these notions to be unsafe, and have enjoyed a resurgence for various reasons, including around the discipline of psychiatriasts and their 'empire building'. Sexism still plays its part here, especially because of the weakness of feminist critical analysis, which should have been a lot stronger but ended up colluding in the continued construction of 'hysteria' etc.

There could only be one cause.. MONEY!! That is all most government depts usually care about.

Whether it is Insurance companies (it could be).. or governments who feel their health systems wont cope with a crisis on this level (if the treatment for XMRV is 3 AIDS drugs and we all need that treatment.. where would the funds come from?) ... who knows.

Since days and weeks I am on different boards reading about the topic of the day, XMRV and the controversy surrounding the hold on the FDA, Alter paper. While I was watching and listening I started to realize that most of the researchers and agencies working on XMRV/ME/CFS know shockingly really very little about ME/CFS and definitively nothing about the urgency for us patients, to get help and results. We, on the other hand, do know very little about these big agencies; how they work and think. (I am not talking about the few mentally retarded at the CDC. We know how they think, but they are not representative of all the agencies and researchers, although they had far too much influence on the politics surrounding ME/CFS. )
I ask myself the question if we are doing a good job, the way we advocate for our "cause”?
First thing, shouldn't we get to know who your dealing with.....?
In the search for this answert i started searching and found this transcript covering the meeting of FDA, EMERGING INFECTIOUS DISEASES: IMPLEMENTATION AND TRANSPLANTATION SAFETY. It is long and really boring, but it shows what is going on behind those doors and how these people work and think. Here just a few phrases which caught my eye:

“From a public policy point of view, I think there's a lot of pressure, there's a lot of pressure particularly from people with CFS, which is a disease of considerable concern, and their belief is that if this is -- does have an infectious cause, and that's a very open question, shouldn't we be reducing the risk of transmitting this to other people. But the problem of transmission of XMRV if it is a problem, it's going to be very much bigger than I think CFS alone. “

"In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. "

"Just a follow-up to the last comment that Roger made that I agree very much, and I think you touched the important point, is that I believe that we are going to confront this type of issues more and more frequently. It became a pattern with for instance, Gulf War syndrome, and all that where affinity groups as you called -- have adopted transfusion as a way of calling more resources to their issues.
And in fairness to them, it's a very serious problem and they haven't gotten enough in attention and support. But I think that we have to be able to deal with the issue because it is going to become more frequent than it is now.
MR. DODD: Thank you. I'm glad you said it, not I"

DR. ALTER: "Yeah, well, I was going to say something very similar to Roger. I think this theoretical formula that I would have -- you can do the same by logic and eyeball (phonetic). But if you had a formula and you took XMRV we know a rough donor prevalence that we'd be okay there but we haven't yet proven it's blood transmissible. That information should probably be coming out soon. But we don't have a disease. So I think -- so that would turn your formula right now to zero but -- so that puts it into a very low priority based on science. That's where maybe perception would come in and then the perception would say well, maybe we should do something but something mild. You know, maybe ask a question or give more information to the donors. Those are mild interventions which are commensurate with the risk. If it turns out that it really causes chronic fatigue syndrome that it moves up the ladder on your priority list. "

I posted this train of thought on another board and someone on that board directed my attention to other agencies involved in the of ME/CFS.
Here is what he said:
There are those who know, and they don't want the blood supply issue to come up.

You need to see who has been in charge of the NIAID at NIH for 26 years.

So, who do we have there at NIH ? Anthony Fauci .
Seems he as well does not know ME/CFS, does not understand the urgency and it seems he is mainly interested in getting HIS research grants. (Do we know where this grants are really going?I mean now?)

We have the FDA: does not know much about ME/CFS and they do not see the urgency in XMRV as long as the virus is not associated with a disease, but want further studies!
They also want to control public reaction to the new retrovirus XMRV, rather than control the spread of the virus XMRV! (See text of conference above)

The CDC has just revamp their website , they continue more than ever to propagate ME/CFS abnormalities are theoretical and experimental, even though all the experts and all of them use the Canadien Consesus Diagnostic Criteria and have accepted those test as part of the diagnostic process.

So, where are we?

The publication to the study which could prove the disease link of XMRV to a disease (Alter publ.), which according to the FDA is needed to upgradeXMRV to an emergency topic, has been halted.

First international Workshop on XMRV has topic speakers wich are NOT ME/CFS speakers ! Micovits is getting side lined?

ADVISORY COMMITTEE BLOOD PRODUCTS MEETING does not list the FDA/Alter studies and goes into a meeting without the results of the most important replication study on XMRV , which could prove disease association !

The CDC denies any biological abnormalities are valid in ME/CFS, that it self endangers Micovits study to be seen as questionable and possible all other future studies, because we do not have a patient cohort criteria which is validated !

All three Agencies seem to have one factor in common, although because of different reasons:

All three agencies want to dissociate XMRV from ME/CFS !

What do we need to do to get results AND HOW DO WE REACT TO THE RECENT EVENTS?

CDC′s Mission is to collaborate to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

And, let's not forget,

Here in the US, our current leadership is working diligently to involve government further into more aspects of our health care.

When the government has more control of the DELIVERY of care, (we have medicare and the private sector now....that will change drastically), the government will decide treatment options. The government will set the standards of care.

It took the money from a private concern to blow the lid off of XMRV. Bless them!

Where will this lead, will it not be more difficult for the private sector to survive?

I don't think so. There's evidence ME/CFS (therefore, theoretically, XMRV) existed long before the 80's. Also, I'm fairly certain some researchers said they believe, based on the structure of XMRV, that it's been in humans, at some level, for hundreds, if not thousands of years.

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From what I understand, the murine close relative to XMRV, MLV, has been around for thousands of years in mice (it was discovered in the 70's). But XMRV, the human version of MLV, I have never heard anyone saying it's been around for thousands of years, or it would have become an endogenous virus part of our genome (which it is not). I remember hearing that XMRV has been around for about 40 years, according to some early estimates. No sources for that, just heard it from 'someone'.

First document cases of CFS was in the USA in 1934 at LA general hospital. Once a retrovirus makes it into the population it multiples. Start with 20 then it goes to 140 then 720 then 5000 then 180,000 until it reaches epidemic proportions. That's where we are now. In the 1980's the problem had reached a level that it "showed up so to speak" Just like AIDES really "showed up" in the 70's and could no longer be written off as being the suisidal tendency of gays, prostitutes and drug users. But you guys know all about this.

When the outbreaks first happened they happened to Doctors and nurses so they got documented and they were take seriously. On the other hand they were so rare that there wasn't a way to really study the problem until another outbreak happened.

By the 60's and 70's the illness was dismissed in the general population as being tiered women who were trying to do to much or men seen by their individual doctors were considered burnt out, unsupported, or to have poor blood. There still were not enough infected individuals (even though it was now showing up in the general populations to really get noticed.

The 80's saw more outbreaks in the general population as well as a rise in the individuals who were reporting the problem. By now there were close to 2 million people effected world wide. Still not enough to engage a resource as prestigious as the CDC. This wasn't AIDES. No one was dieing horribly (that they could see) Many CDC officials thought that it was just groups of people trying to get attention. AIDES was so big at the time and the CDC was speaking for the global community at that point. Even today America and the CDC do more for AIDES prevention and cure than any other country.

But now we have a different problem entirely, OVER 17 million are ill. The next exponential jump in numbers is happening now. Based on the AIDES tables 17 million goes to 184 million next.

That 3% of infected healthy controls won't stay healthy forever. So what happens when the number of ill world wide hit 184 million?

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Interesting perspective.

Here is another thought. I would speculate that many folks may take years to fully get CFIDS. I think it took me 25 years to get incapacitated from it. It comes on so slow some people don't know what hit them. Some can still fucntion but just tired, or maybe depressed, then others think they are "getting old". Some think they are just getting headaches. So there is a whole wave of folks thinking they are tired or have headadches.... But could be a bunch in the pipeline.

I also think the the increase in health care costs is directly related to people trying to find out what is going on without getting anywhere. I know many neuorologists around here in SF bay area simply refsued to diagnose me, and prefer to keep me coming back for balance training at the tune of $$$$ a pop on some worn out machine that could be a child toy for all I was concerned. Just see me as a cash cow. Guy should have his medical licesne jerked for that kind of robbery. If you are in the bay area, you may know him Dr Mohamed Ahmed. I asked for some kind of letter for disability, and he gave me a letter to totally destroy any propects of getting on disability. I had to pay for that too boot. Luckily I got his assciate to remove the letter after I reaoned with the front office person.

Another neurologist even asked me point blank if I was sensitive to light. I had no idea of the connection to later. he knew what I have, just ignored it and sent me packing. So dang frustrating. These doctors get this stuff every day, it's impossible to imagine they can't get a hold on this.

Understanding is going to happen one way or another, the problem is too big for one organization to sweep it under the rug. Cat is out of the bag.

"In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. "

Reminders, when we think of prevalency, we really don't know. Japanese have done the largest testing. What was their figure? 1.7% I think. So theirs might be fairly accurate of the group they tested, which may or may not be reflective of general population. In fact, I would surmise it wasn't. I think they tested blood donors. If that's the case, then the general population (including many sick people) might have a higher percentage. But it is also possible that rate is lower, or higher, based on geography.

All other prevelancy studies (general population) are just too small to have any meaning.

I still say even the research assays are not able to detect them all, including WPI's. This is an incredibly hard virus to find.

If we knew what illnesses are likely to be caused by this, then we might be able to speculate based on population that has those illnesses. (How many brain cancers are caused by this?) But at this time, the nature of this virus means it is a "virus of interest" in many illnesses. And even if we knew what illnesses implicate XMRV, it is possible it isn't all of them. Researchers are saying they do not think all prostate cancer is caused by XMRV. So what is the real percentage? Again, studies have been too small with imperfect assays to say.

I really think XMRV will be the criminal virus in many, many, many illnesses. And, if it isn't, then it is likely other hide-and-seek retroviruses are. I do believe this is opening up a whole new field. Remember, XMRV is different than HIV in that activation of this virus often must include triggers after initial infection: androgens, cortisol or other infection. HIV is not like that. Is there another one?

Back to CDC, once paradigm became institutional culture, then any new evidence was put in their puzzle. It is like a jigsaw puzzle where it looks like a piece fits, but it really doesn't. From that point, all other puzzle pieces are made to fit around that. But the picture you see will not be accurate, even though it looks like the pieces fit where you put them.

Just waking up here folks happy Sunday. I've appreciated all your comments - thx Stone for starting this thread. These comments jumped out at me

I found RustyJs idea that the CDC and CAA,to maintain their empires, need a cure not to be found intriguing. #24

and taniaaust1s comments that money is the reason to the heart of things

taniaaust1 said:

There could only be one cause.. MONEY!! That is all most government depts usually care about.

Whether it is Insurance companies (it could be).. or governments who feel their health systems wont cope with a crisis on this level (if the treatment for XMRV is 3 AIDS drugs and we all need that treatment.. where would the funds come from?) ... who knows.

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And Tina also to the point

ego, sexism, lack of biological abnormalities early in investigation, inability to admit a mistake, etc. +++++ conclusion early when evidence was scant. Once a paradigm set in (based on sexism and ego), it became institutional and humility is not in the vocabulary of government agencies or scientists, for that matter.

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And I love aruschimas point that we need to know our enemies, oh, uh, I mean, know our audience just as any successful speaker or writer does + that all agencies seem to be wanting to separate XMRV from CFS.

The quotes s/he has here from the different agencies are brilliant at seeing their thinking. I think that this is extremely important for us.

DR. ALTER: "Yeah, well, I was going to say something very similar to Roger. I think this theoretical formula that I would have -- you can do the same by logic and eyeball (phonetic). But if you had a formula and you took XMRV we know a rough donor prevalence that we'd be okay there but we haven't yet proven it's blood transmissible. That information should probably be coming out soon. But we don't have a disease. So I think -- so that would turn your formula right now to zero but -- so that puts it into a very low priority based on science. That's where maybe perception would come in and then the perception would say well, maybe we should do something but something mild. You know, maybe ask a question or give more information to the donors. Those are mild interventions which are commensurate with the risk. If it turns out that it really causes chronic fatigue syndrome that it moves up the ladder on your priority list. "

I would STRONGLy recommend reading the summary of the international Zagreb blood conference (PFA/PEI Workshop on Surveillance and Screening of Blood Borne Pathogens (Zagreb, Croatia, May 26-27, 2010) at the link above

this afternoon we attempted to chart a path forward. Where do we go from here?

We really wanted to draft recommendations and an action plan but in trying to get these answers to these questions that we have here I heard even more questions asked.
(Laughter)

MR. MIED: I guess that's the nature of this business. Some of the comments we heard were that prioritization in itself is not all that helpful. What we really need is a statement about what is acceptable risk. We need a framework. Two things are missing we need to develop a scoring system, for example, how many cases can society accept? Secondly, communication between industry, regulators, and public, we keep hearing that over and over today. We need some mechanism for communicating what can be done and what can't be done. Can we develop a formula for prioritizing, for example, prevalence times transmissibility times severity of the resulting infection and develop mitigations based on the score? <snip>

The exercise is not necessarily prioritization but when do we act with an intervention.<snip>

If we look back to lessons from the last 20 years we actually have acted because of the availability of a test.<snip>

It was pointed out that everything we've done has been in the face of a disease. For SFV and XMRV we don't have a transfusion transmitted disease that we can identify. We need to be sure we're chasing a disease. For XMRV we don't have that. If it causes chronic fatigue syndrome then it moves up the ladder. So that has been made a research priority, XMRV. So really it's on the priority list for action already.

If the public could learn that we have a viral flora in the blood just as we have a bacterial flora in the gut we'd be in a totally different paradigm. <snip>

It was stated that XMRV is where West Nile virus was in 1999 and we were a little bit late. If we had an accurate model we would have done better.

So maybe we need to again readjust our communication strategies to say look, you know, blood is not zero risk and anybody who gets blood components are going to have to accept the fact it's not zero risk. And you know I think it's been driven to a large extent by attention to tainted blood. And we're still living in the legacy of that and perhaps it's time to move forward with different kinds of messaging.

the elephant in the room that I don't think has been addressed is cost. Clearly that is a big inhibitor for a lot of discussions about test development, about implantation, about a lot of the issues. And I think that needs to be entered in the equation whether we're talking about an intervention or whether we're talking about the outcome.

Over the years I've spent a good deal of time trying to really nail down the REASON or REASONS for the CDC's blatantly inept handling of CFS from the beginning. There is much speculation. I would like to start a thread dedicated solely to what people think are possible motivations for the CDC's behavior.

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Hi Stone, Hi All,

There's much to speculate on; I appreciate all the responses here. My general take has been that the CDC, which had postulated that chronic Epstein Barre virus was the the causative factor for CFS in the late 80's, was TREMENDOUSLY embarrassed when it was shown that it wasn't. With egg on their face, they probably determined they would NEVER let something like that happen again. And to try to cover their ineptitude, they additionally decided to name this "non-pathogenic" disease Chronic Fatigue Syndrome. How's that for revenge on the the people with CFS who CAUSED them such embarrassment?

Why does CDC ineptitude continue unabated to this day despite so much scientific evidence suggesting a pathogenic factor in CFS. To me, it's hardly anything more than protection of ego, and protection of careers. And probably continued anger at the CFS population who they apparently feel is about to embarrass them once again. And they are DETERMINED to NOT let that happen. These are my best guesses; we'll probably never really know for sure.

As long as we are speculating, I would throw out one additional possibility; the CDC is controlled by dark forces of evil. Sure, this flies in the face of secular thinking and scientific reason, but it is entirely possible that malevolent force(s) exist on a spiritual plane and take corporeal form in certain cases in order to wreak havoc and sow misery in this world. CFS/ME causes lots of misery, and as an added insult, it robs patients of their last shreds of dignity and often steals critical support from friends and family who come to gradually doubt the sufferer's sanity based on venomous information provided by the CDC.

Sadly, this would be a bit difficult to prove to the satisfaction of the mainstream public, but is not really less supportable than some of the other conjecture here. Likely, we will never know exactly why things have unfolded as they have.

Why does CDC ineptitude continue unabated to this day despite so much scientific evidence suggesting a pathogenic factor in CFS. To me, it's hardly anything more than protection of ego, and protection of careers. And probably continued anger at the CFS population who they apparently feel is about to embarrass them once again. And they are DETERMINED to NOT let that happen. These are my best guesses; we'll probably never really know for sure.

Thanks for your comments and my little ego is flattered!
I am glad that my thoughts do make some sense to some, cause my ME brain has severe problem's getting all the info in my head sorted out.

On a serious note, but what are we gonna do about this current situation? Wait and see how it plays out or start a serious campaign, irrespective of what is going to happen or not happen in the next few days ?
I think we should ignore the CDC and focus on getting some big guns on board. What about Clinton ? He is already an highly respected activist for AIDS, one more little Retrovirus for him to campaign for would not be a problem, i think and the Whittermore Peterson Institute could use some real funding. Of course this has to be a well planned action, which has to be thought out in a think tank of several smart people. No hasty quick action, which will lead to nothing.....